Part 45 – Spending Time

Continued from Part 44

As the sun came up on the first day of the year in 2011, family members filtered in to Dad’s bedside in the den of my parents’ house.  Dad alternated between dozing for short periods of time and talking to those around him in a raspy voice.  As we watched him dutifully try to swallow the pills that we gave him, we decided to start splitting them in half and then, if (when) even that became problematic for him, our back-up plan, which we ended up needing to employ only the next day, was to crush them or to ask the Hospice nurse for a liquid form of the same medicines.  Like the Hope to which we were all still so desperately clinging, we would adjust the medicines as needed as part of the Bargain, while never losing sight of our overall goal of keeping Dad as comfortable as possible.

When I think back to the scene at my parents’ house that morning, I see it in my memory like footage on a time-lapsed video:  a flurry of activity, with different family members and later the Hospice nurse coming in and out of the picture and with Dad there in the center.  After a brief and probably unnecessary discussion with my mom and my sisters, I cancelled the arrangements for the trip that Mom and I had planned to take with Dad to the Brain Tumor Clinic at Duke for a follow-up visit on January 17.  I emailed back and forth with Dad’s swim team coach and friend Ashley as she worked to put together a schedule of meals to be provided to my parents’ house several times a week by Dad’s teammates on the swim team and other friends through the first week in March.  My sisters and I wrote out a calendar showing when each of us would be there with Mom and Dad through the end of February.  We were all struggling more than I can adequately describe to process what was happening and to think about what the future would hold; the amount of time we would have together was still very much unknown, and I guess it helped us in some way to feel a tiny bit of control by having a plan of sorts, “just in case,” a phrase that we seemed to be using a lot during that time.  It was so hard to try to find the right balance of what should be done right that second and what reserves we would need at different points in the future.  As my brother Lee said in an email, “Ideally we would all take leave at our jobs and just be there [with Dad] 100 percent over the next few weeks and months.”  Even though none of what was going on was ideal, I suppose we were all still hopeful on some level that Dad would rally enough to have some quality time left, and of course we wanted to do what we could to be prepared and to be present for that, if our hopes came to fruition.

After Dad had gotten home the day before, I had updated the Care Page to let people know that he was home, and, in the morning on New Year’s Day, I updated it again.  We knew that a lot of people were wondering and worrying about Dad and about us, and we hoped that through these updates, we could inform others about the fact that we had chosen to bring him home with hospice support while making it clear that we did not want to garner sympathy.  I, in particular, didn’t think I could bear anyone else’s shock, sadness, grief, disbelief, anguish, or – what I thought would be the hardest to hear as I looked at Dad lying there in the bed – denial.  I had more than enough of those things on my own.  I felt like I was so fragile that I would absolutely fall apart (or unleash) if anyone said that they were sorry or otherwise framed our decision and Dad’s presence at home with us as a loss, even though of course we all regretted that his body could no longer withstand the treatment we had so hoped would give us a miracle.  We wanted (and needed) support and love, and thankfully that’s exactly what we got, through the many messages on the Care Page and via other sources from our extended family members, our friends, and even from people whom we didn’t know but who knew Dad.

We thought Home would be nourishing for Dad, enough at least for him to improve enough to be comfortable and settled.  As fuzzy as some of my recollections of my thought processes are from during this time, I clearly remember that we were all expecting weeks and maybe even months still with Dad and that we were hopeful (personally, I was actually expectant) that he would feel ok during the majority of this time.  My sister Jennifer, who lived the furthest away, had reservations to fly home with her husband and children in the afternoon that day, and, like the rest of us, she was painfully torn about whether she should stay by Dad’s side – which actually seemed less hopeful – or go home as planned and come back again to see him soon.  How we desperately wished that the Hospice nurse or someone else would (or could) tell us what the best thing to do was!  Instead, though, as we had been doing during the entire ten weeks that Dad had been sick, we pulled together and did what we thought should be done, with Hope and a couple of back-up plans in our back pockets.  Mainly, our Plan was to have a Plan, even though we knew revisions and adjustments would most certainly have to be made along the way.

Before she and her family left to fly home, Jennifer booked a flight to come back the following weekend.  Lee, who also lives far away, booked a flight to come for the weekend after that, and Nancy, my husband and hers, and I filled in as many of the other spots on the calendar as we could.  We made arrangements with a company that provided “sitter service” (How awful is that term?) to have a trained nursing assistant come during the other times so that there would always be a third person at the house to help Mom with Dad, plus the Hospice nurse, around the clock.  None of it was ideal, but it was the best way we could see to arrange for Dad to be at home, as he wanted and as we did too.  

Around the middle of the morning that day, I went upstairs to take a shower.  As I was getting dressed, Jennifer knocked on the bathroom door.  “Dad is eating bacon and drinking beer!” she said excitedly through the door.  With my hair still dripping wet, I hurried downstairs to see for myself, and there he was, in the den, with the head of the hospital bed cranked up, eating bacon and some of what he referred to as “fruity dessert,” which was fresh fruit that had been purchased already cut-up at the grocery store, a long-time favorite snack of his. Evidently, Dad had smelled the bacon that my brother-in-law David had been cooking in the kitchen and had requested some along with the “fruity dessert” and a Foster’s, and, of course, he had been served all three right away.  The TV was being changed back and forth between two of Dad’s standard New Year’s Day favorites, football and the parades.  I remember sitting in a chair beside his bed and consciously soaking in what was going on in the room, so happy that we had been able to bring Dad home and that we were all there together in that moment, but so sad because I couldn’t help myself from realizing the necessity of hoarding that memory in my mind for when we couldn’t be.

In the many pep-talks I had gotten from Dad before races I had run when I was growing up, he had always advised me to run an evenly paced race while still saving enough energy to “surge” before the finish.  “The race can be lost anywhere along the way,” he said every time, “but it can only be won on the last part of the course.”  I guess that morning was Dad’s surge, his way of “kicking it in” on the last part of the course for us, even though he had already put in such an outstanding, impressive effort along the way.  

“I need to close my eyes for a little rest,” he said after he ate.  Not long after that, though, he opened his eyes and motioned for me to come closer to him.  As I leaned in, with fear and confusion in his voice he asked hoarsely, “How will you know what I want to tell you when I can’t tell you anymore?”

Looking back from my vantage point now thirteen months later, I wonder if he meant what I thought he meant at the time when he said these words.  I thought he was seeking reassurance that we would be able to meet his needs if he lost his voice, and, as such, that is what I focused on when I responded to his question.

“We’ll know because we’ve been able to spend so much time with you, and we know you,” I told him.

Not completely convinced, he said, “Are you sure?” 

“Yes, Dad,” I told him.  He made a motion with his fingers by his shoulder at the edge of the sheet on the bed, and then an idea came to me about how I could prove to him that we would know what he was trying to tell us, even if he could only gesture.  “You want your covers to be pulled up, right?” I asked him.  

“Yes,” he said, and then my sisters and I demonstrated the other hand signals that we had all come to associate with what he wanted or needed over the past weeks, from touching his forehead to mean “I want a cold cloth on my head,” to tapping his mouth to mean “I want something to drink,” to making a slight “come here” gesture with his index finger to mean “I want a little piece of chocolate.”  I could see acceptance coming into his eyes, and, although I’m left to wonder if it was in regards to something much larger, at the time I took it to mean that he believed and trusted that we would continue to be able to meet his needs, and I was so grateful for that.

Over the course of the previous afternoon and during the night, we had decided to rethink our plan of having Dad’s bed in the den.  Instead of enjoying being in the center of the activities going on in the house, he seemed confused and overwhelmed, and we hoped the solution was relocating the hospital bed to my parents’ bedroom. 

Because we knew the move could potentially be stressful and could contribute even more to his level of anxiety and confusion, we asked Mom to take the four kids to run an errand to cut down on the number of people in the house so that we could keep things as quiet and serene as possible.  And then, while Dad closed his eyes again for a little while, we huddled to come up with a plan of how we could safely move Dad and the hospital bed from one room to the next.  Fortunately, the bedroom was on the same floor of the house, just around the corner from the den, but there was a short, narrow hallway that included two ninety-degree turns to navigate in between, and there was no way the hospital bed was going to fit through that opening without being disassembled.  Dad had suffered so much from being moved while he was in the hospital, and we knew that the transfer could be scary and even painful for him, and so we turned over several possible strategies before settling on what we thought was the best idea for the move.

The Hoyer lift was out; having to turn Dad back and forth in the bed to stuff the harness underneath him and well as having him dangle in the air as we cranked the lift so the apparatus’s arm would swing him outward was just too risky.  And so, we improvised:  my sisters and I pulled the sides of the sheets underneath Dad up and wrapped them around him in a swaddling fashion.  We lowered the bedrail and the adjusted the height of the hospital bed as low as possible, and then our three husbands swiftly and surely yet very gently slid/lifted Dad straight across from the bed to the couch.  My sisters and I sat on the floor next to the couch to act as “human bedrails” and to distract and comfort Dad as needed.  In a span of less than five minutes, our husbands, working in tandem while throwing out periodic reassurances like “Hang in there, Bill! We’re almost done!”, deflated the air mattress, disassembled the bed frame, moved all of the equipment from the den into the bedroom, and put everything back together, including putting on a fresh set of sheets on the newly-relocated bed.  

I left my sisters to sit with Dad and stepped into my parents’ bedroom to check things out, and I was happy to see the hospital bed all set up, right next to my parents’ king-sized bed.  With the rail lowered on one side of the hospital bed, the two beds were almost conjoined to make one giant bed.  Given the circumstances and what we thought Dad needed, I thought it looked perfect.  But next came the really tricky part: moving Dad from one room to the other.  Again, we decided to forego the equipment (the wheelchair and the lift) and to use strategy and muscle: with Dad still cocooned in the sheets and blankets and with my brother-in-laws clearing the way and providing back-up support “just in case,” my husband carefully lifted Dad from the couch, swiftly carried him down the hallway to the bedroom, and tenderly placed him on the bed so that my sisters and I could quickly cover him up to keep him from being cold.  Dad so obviously trusted his three son-in-laws so completely; he asked them once during the move, “Y’all have me, right?” but other than that he didn’t seem nervous or scared at all during the transfer, and he definitely seemed relieved to be in his own bedroom once the process was over.

Mom and the kids came back and were glad to see that the undertaking had been a success.  We set up a baby monitor in the bedroom with the receiver in the kitchen and, when Dad announced that he needed a little quiet time to rest, we left the room for a while, although I will admit that my sisters and I took turns standing right outside the bedroom so that we could listen and peek around the corner to check on him every couple of minutes.  It felt odd to leave him alone even for a minute, something that we hadn’t done since he’d gotten sick 70 days before.  The whole situation felt surreal and very dichotomous; it was so good to have him home but so overwhelming and shocking that we were where we were.  Watching him over the next couple of hours as he slept, I think part of me had already accepted that our time with him was very limited, but another part wanted (and needed) to believe that he could turn things around and hang on for much longer, although of course I didn't want him to have to if that meant more suffering for him. When I pressed for information during her visit that afternoon, the hospice nurse said that she couldn't predict how long but that she would guess it would be “in terms of weeks rather than months.”  As my mom, my sisters, and I listened to her words, our hearts were breaking.  We wanted to do whatever he needed, and yet what was so obviously happening was something none of us wanted to accept. 

Nancy was sitting in the room with Dad when he woke up, and he told her to tell me to come into the room so he could ask me something.  She did (she thought he was going to ask for medicine), and I did, and Dad asked, “Can I have a beer?”  I told him yes and that I would check the schedule to see what medicines he needed and then after that I would bring him a beer.  He seemed a little perturbed by my answer, and then he suggested not so subtly, “How about if you get the beer first and then do whatever else after that?”

I guess I hesitated for a second, and so he added for emphasis, “Don’t worry; just hurry!”

“OK, Dad,” I said, and as I left the room to get the beer, he called after me:  “Tell everybody: don’t worry, just hurry!” 

I returned as quickly as possible with the beer, and then I held the straw while he sipped it.  After a couple of minutes, he seemed to tire, and he told me to put an extra Foster’s under his bed “just in case” he needed it for later.  He said he didn’t want to have to bother anybody or to wait if he wanted it.  I told him that I liked getting things for him, and, with a half-smile on his face, he responded, “Well, then, I guess I just don’t want to have to wait.”  

Jennifer, her daughters, and her husband each spent time with Dad before they had to leave for the airport that afternoon.  Each of them had to lean in close to him so they could hear him talking with his scruffy voice.  When my nieces told him they loved him and then got up to leave the room, he put forth a visible effort to push his voice into an audible whisper as he called out that he loved them, too.  As my husband, my daughters, and I did when we had to leave the next day, they all thought they still had time to come back and spend more time with him; none of us foresaw the speed at which things would happen over the next few days.

We continued to take turns sitting with or lying in the bed beside Dad for the rest of the day, through the night, and into the next day.  He was still having intermittent pain, mostly in his head and his throat, and he was still having some anxiety, but all in all his discomfort seemed to be much better controlled than it had been in the hospital.  Dad didn’t seem distressed about his own plight; his anguish came from worrying about his family and our future.  He so obviously trusted that we would take care of him, but he also seemed to want to still be able to take care of us, too.  It was like that was the last thing on his Revised Bucket List or on his “to do” list.  

Although we gave Dad some small sips and then later squirts from syringes of water to drink, he was no longer requesting anything to eat or to drink. Little by little, we realized the truth about Nourishment, the substances necessary for growth, health, and good condition.  What he needed wasn’t food or calories – it was re-assurance, comfort, and love.

By Sunday morning, we noticed that Dad’s level of anxiety and even confusion seemed to escalate if there were more than a couple of people in the room with him at once or if he could hear any type of background noise like that from the TV or any music.  He seemed to like having someone there with him and several times patted the space in the bed beside him to indicate that he wanted one of us to lie down beside him in the bed, which we were happy to do.  The pain medicine that we had been instructed by the Hospice nurse to give him on a strict schedule “to stay ahead of the pain” allowed him to rest intermittently, but at times we could see that he was distressed, even in his sleep.  Several times while he was asleep, he called out things like, “I have to check on Mom!” and “Stanley [his younger brother] and I have to finish our homework!”  By the time I had to leave to go home with my husband and my daughters, the worrying was blurring over into his awake-time too.  It seemed like Dad was pulling out all the stops just to hang on.

Before I left, I went over the medication instructions again with my mom and Nancy, who, along with Nancy’s husband David, were staying there.  My daughters and my husband hugged and kissed him goodbye, and he in turn told them he loved them.  As they packed the car, I went into the bedroom, climbed into the hospital bed, and put my head on Dad’s chest.  He was quiet and still.  I told myself that he seemed to be resting peacefully and that that was a good thing, but I couldn’t stop the tears from coming so fast and furiously that after a couple of minutes I had move my head from his shoulder so I wouldn’t get his entire shirt wet.  I told him that I loved him, that I was so proud of him, and that I would always feel so lucky to have him for my dad, and then I kissed him and got up to walk out of the room.  Although I did not realize the quickness of the events soon to unfold, as I looked back at him, so small and so quiet in the bed, I knew in my heart that, despite his struggle to stay with us and ours to keep him with us, Dad was fading away.

Up Next … Part 46 – Paving the Way

Part 43 –At Last

Continued from Part 42 

I wish I could draw, because if I could, I would draw two pictures side-by-side, one that shows how I pictured things going as we prepared and then got to bring Dad home from the hospital, and the other that shows how things actually went. 

On Dad’s last night in the hospital, his mood fluctuated between excitement about getting to go home the next morning and distress that he couldn’t leave even sooner. “My ride [the ambulance] cannot get here soon enough!” he said impatiently several times.  My sister Nancy and her husband David stayed with him during the first half of the night; per Dad’s request, David shaved Dad’s face, and Dad and Nancy talked about what Dad was going to wear home the next morning.  “I guess I’ll wear flannel pj’s and running shoes for the ride home,” Dad announced.

Dad put in a special “last dinner in the hospital” request with David, who kindly went and picked up a to-go order from Steak ‘n Shake.  Dad ate half of his order of Three-way Chili, took a break, and then proceeded to gobble down some pretzels, half of a Snickers bar, and an entire Cliff bar, and, of course, washed it all down with Diet Coke. 

By midnight, my sister Jennifer and I had tagged-in for the late-night shift with Dad.  He was getting super-antsy; he requested and was given a sleeping pill and later another pill for anxiety, but nothing seemed to calm him.  He directed Jennifer and me to “get real close,” and so we each pulled a hospital-grade recliner up next to one side of his bed and put the bed rails down so we could hold his hands and talk to him while he tried to go to sleep.  After an hour of so of more fretting (“You PROMISE I’m going home FOR SURE tomorrow, right?” he asked us repeatedly), he dozed for about an hour but woke up again around 3 a.m. saying, “It’s just too much!  I hurt all over!”  After watching us try for quite some time to get him settled again, Nurse Jim gave Dad a pain shot, which knocked him out for a few hours.  

While Dad slept, Jennifer and I talked to Jim again about how worried we were that we wouldn’t be able to take good enough care of Dad at home.  Jim was very reassuring and, as an added bonus, packed some “to go” supplies for us to take home.  He sang the praises of hospice care and of the support they had to offer.  Finally, we looked through the window of the hospital room and saw the sun coming up over the horizon; at last, it was Going Home Day!

About 8:00 that morning, Mom and Nancy took over at the hospital, and Jennifer and I drove to Mom and Dad's house to coordinate the preparations there.  Dad continued sleeping for about another hour; when he woke up, he remembered right away what was planned for the day.  He was still very anxious, though, and still in pain.  By 10:00, he started experiencing some shortness of breath.  “When is that ambulance going to get here?  Why can't they hurry up?” he asked over and over, first eagerly, then angrily, and then desperately and in a panic.  When Nurse Dave noticed Dad’s heart rate climbing and saw the anguished look in his eyes, he gave Dad a pill for anxiety and a shot for pain.  At last, Dad relaxed, and then he fell into such a tranquilized sleep that he did not wake up even as the paramedics transferred him from the hospital bed onto the gurney and then into the ambulance, as they sped down the highway, or as they wheeled the gurney into the house.

Meanwhile, at my parents’ house, my husband Kevin and my brother-in-law David were hastily rearranging furniture while Jennifer and I directed the set up of the newly delivered hospital bed.  Kevin and my daughters went on a mad dash to the store to buy extra sheets and pillows which we quickly threw into the laundry; we wanted to be prepared for bed-linen changes, and we knew the pillows would be needed for positioning Dad in the bed.

We had decided the day before that the hospital bed would be set up in the den; we thought Dad would enjoy being “in the mix” and that he would really like watching his flat-screen TV right by the fireplace and the space heater that was set up in that room.  Our husbands switched out the curtains so that heavier ones were hung in the den to block out early-morning sunlight (ambitiously – or maybe crazily – we still held out hope that Dad would be able to sleep despite the track record since he'd gotten sick).  The guys brought a couch from upstairs to add to the couch in the den so that two people could easily sleep in the room with Dad at night.  It was a mishmash of furniture and equipment, but it was as we felt it needed to be so that we could accommodate Dad’s needs at home.

A Hoyer lift

The medical equipment guy also brought a pressure-relief mattress and a Hoyer lift, which is a specialized device that uses a sling and hydraulic power to gently and safely transfer a person whose mobility and strength are compromised from one place to another.  I was familiar with patient lifts from my hospital/nursing home days of employment in the past, but it had been years since I’d operated one and even then it had been more of an industrial grade model.  Jennifer asked the rep to instruct us and then to watch us use the lift to be sure we wouldn’t risk injury to Dad when we used it to lift him.   Jennifer played the role of the “patient,” and Kevin, David, and I practiced using the lift until we felt confident.  We hurriedly put sheets and blankets on the bed, and then we waited.  (We had his favorite Dodgers blanket and his Glee pillow all set to go!)  Oddly, along with Jennifer, David, my husband, my daughters, and me, and alongside all of that medical equipment and awkwardly arranged furniture in the house, it felt like there was Hope, something positive in the room with us.  And at last, I, who had had tears streaming pretty much non-stop for several days, was able to stop crying.

When Dad’s “ride” arrived at the hospital as scheduled about 11:00 that morning, he was still knocked out from the sedative.  There were no big goodbyes with the staff, there was no cheering by Dad or by anyone else, there was no Going Home outfit of flannel pj’s and running shoes for Dad; everyone was all business and efficiency.  Had he been awake, I’m not sure if Dad would have high-fived everyone at the nurses’ station and in the hallway on his way outside or cried tears of joy and relief – maybe both.  Regardless, though, it was a smooth ride home, something that was well deserved and perhaps even long overdue.

When the ambulance quietly pulled up into my parents’ driveway around noon that day, we were as prepared as we could be inside the house.  The fireplace was “on” (as Dad said about the gas logs), there was Diet Coke and Foster’s chilling in the fridge, and the pets were quarantined in a bedroom to keep them from being underfoot during the transfer process.

I had envisioned Dad, exuberantly smiling and laughing as he entered his house that day, but the scene unfolded much differently.  Dad slept as the paramedics rolled him in on the gurney through the garage and into the den and as they smoothly shifted his sheet-covered body into the hospital bed.  He slept as they simultaneously raised the rails on each side of the bed, checked his vital signs once more, and quietly exited out the back door.  He slept while the dogs and his cat Foster came back into the room and took their places on the pet-beds by the fireplace.  In fact, he continued to sleep for several more hours. Not quite the homecoming I had predicted, but at least it went smoothly and at least, at last, Dad was home.

While he slept, we unpacked, did more laundry, and watched over him.  I got out my laptop and searched the Internet for modified clothing that I thought would make it easier for his clothes to be changed when needed.  I kept picturing him sitting up in his recliner, wearing sweatpants and a running t-shirt, but I wasn’t sure how it would work for him to be dressed like that because of his catheter and the PICC-line in his arm.  I bookmarked a website that sold what they referred to as “easy access clothing,” but the clothes they offered were not what I would call stylish – and for some reason (habit, denial, hope?), I still thought that mattered.  Finally, I wrote “ask about clothes” on the To Ask Hospice Nurse List in the Notebook; We have to figure out something about what he will wear, I thought.  He won't want to keep wearing a hospital gown, and surely the Hospice nurse will have a resource for what we are looking for apparel-wise.

Not long after that, the medications ordered through Hospice were delivered to our door – no having to get out in the cold again, no waiting in line in Walgreen’s, no insurance co-pays!  My brother-in-law Peter inventoried and organized the pills and recorded the name and the dosage of each in the Notebook.  A little while later, Linda, the intake nurse from the Hospice service, arrived.  As our husbands and my daughters stood guard over the still-sleeping Dad in the den, my mom, my sisters, and I sat down with Linda at the dining room table for an exchange of information.  She asked questions, she told us more about Hospice, and she assured us that we would have the support we needed to care for Dad.  We asked questions (shocker, right?), we told her about Dad and our story, and we showed her the Notebook, including the chart we had been using to keep up with his medications before he had gone to the hospital.  Linda looked at our lists and our charts, and with the utmost compassion in her eyes, she told us that we had done a good job keeping up with everything.  “Hospice is here now to do most of the ‘figuring out’ for you, though,” she said tenderly.


“We’re just so worried, and we want to make sure we do everything right for him,” I told her.  She told us that, above all, Hospice would focus on symptom-relief and comfort, and she pointed to a little box that had been included in the delivery from the pharmacy.  “That’s the Crisis Kit,” she said. “It will be here just in case.”


“In case what?” my sister asked her.


“In case he gets into distress for any reason – if he has trouble swallowing or breathing or if we need extra help controlling his pain,”  she said.  She must have seen the panic start to creep onto our faces, because she quickly added, “If you have any concerns or notice any changes in him at any time during the day or night, you should just call the Hospice nurse on duty and she will come right over.  She may even instruct you over the phone about giving him medicine in the Crisis Kit or in the prescription medications he has.  Don’t worry, though, you won’t have to decide any of it on your own.  We will take the reins, so to speak.” 

We asked her about the two things on the medical care list that made us the most nervous:  flushing the PICC-line (to keep it open in case it needed to be used for medication administration at a later time) and dealing with Dad’s blood sugar issues.  To the first concern, she said that an RN from Hospice would come by at least once a day and could do the procedure, instead of by us.  She opened the blood sugar testing kit and showed us the lancets and the glucose testing meter.  She explained how we were to insert a lancet and a glucose test strip into the testing meter, push a button to release the lancet into his finger, and then wait until we saw the blood sugar reading appear on the digital screen.  “Do you want to try it on him while I am here?” she asked.  “It’s not time to do it yet but we can just do it for practice if it will make you feel better.”


“Just do it on me!” Jennifer volunteered.


“Seriously?” Linda said.

“I’d rather have it practiced on me than on Dad,” Jennifer responded, and so Nancy set up the meter and checked Jennifer’s blood sugar (a perfect 100!).  We were good to go on that.


I told Linda about my quest for suitable clothing options for Dad, and she said that, while we were of course free to purchase custom-made clothing, many of her patients who didn't just wear hospital gowns wore "street clothes" or pajamas that had been cut down the sides or up the back to make it easier for those items to be put on and taken off.  Easy enough, I thought.

Linda said that she needed to look in on Dad as part of her initial assessment.  I told her that we did not want to tell him that we had called Hospice.  She said that she had had that request before and that her “rule” was that she would take off her name tag which prominently identified her as being from a hospice service and that she wouldn’t bring up the subject with Dad but that if he asked her if she was from Hospice she wouldn’t lie to him.  Fair enough, I thought, and we lead her into the den to see him.  She gently and efficiently checked his vital signs and then went back into the dining room to record the information in her notes.  She hugged my mom, my sisters, and me and told us that another RN would be coming in the morning and that she or the other nurse would be available by phone if we had any questions or concerns.  We felt better; we felt like there was a plan and a back-up plan in place.  We felt like we could handle things, at least until the next day, and, as it had been, our strategy was to take things one day at a time.

As the sun was setting and the room was starting to get dark enough for us to need to turn a couple of lamps on, Dad opened his eyes and looked around.  “At last, he is awake!” I thought.  I waited for him to break into a big smile and say that he was so happy to finally be back at home.  Instead, though, he said in a desperate, gravely-sounding voice, “But you promised me I was going home!”  

“You are home, Dad!” I told him.  But he wasn’t convinced.  We told him he was in his den and we pointed out the things around him.  The more he looked around the room, though, the more disoriented and upset he became.  Finally, my sister picked up Foster and put him in the bed with Dad.  Foster curled up right next to Dad and purred loudly, as Dad petted him and dozed off again.

Up Next – Part 44 – Hospice, Part 2

Part 17 - Going Home

Continued from Part 16

My middle sister spent the night with Dad at the rehab facility the night before he was to be discharged; Dad was very anxious and antsy, as he put it, "to get the show on the road."  When Mom arrived the next morning, she and my sister took turns loading the car, supervising Dad, and getting the last-minute discharge papers and instructions.  The amount of stuff that had been amassed over the 20-day stay was incredible.  Excitement (and fatigue) was in the air as they took off down the road for the 45-minute drive home.  

As I’ve mentioned, some necessary changes had been made to my parents’ house over the past month while Dad had been away.  My brother-in-law and my husband had mounted safety bars in two bathrooms and had re-arranged the furniture in the den including removing or taping down rugs for smoother transitions.  I had taped reminder notes for Dad around the house; for example, one on the door from the garage into the house said “UP with RIGHT LEG FIRST” to indicate how he should safely get up the single step into the house on the walker.  Dad pretty much barreled in; he literally couldn't wait to get settled in his favorite recliner in the den with the newspaper and a Foster’s.  

Dad had a headache pretty much all the time at this point; he would occasionally mention it, but generally he only admitted that he was in pain when he was directly asked.  He was on some pretty strong pain medication that we had been told would make him drowsy, but we noticed that it actually hyped him up most of the time, although at the same time it didn't cut through the constant exhaustion that followed him around.  

My husband, my daughters, and I drove from out of town to join my parents and my sister and her daughters before suppertime that day.  I remember thinking that everything looked so normal on the surface when we walked in the door of my parents’ house.  As I cut off the hospital bracelet still on Dad’s wrist, I held back tears of gratitude that he was home and silently made a wish that he would never have to wear one again.  

The physical therapist at the rehab center had suggested that we get a recumbent bike for Dad at home, and so we bought a slightly-used one and set it up in the dining room.  “I’m so ready to get back on the bike!” Dad said, although he begged off when we asked if he wanted to try it right then.  As I watched him give it his all to go from the den to the bedroom on his walker, it hit me that Dad might possibly never be able to go upstairs in his own house again.  That was an easy enough bargain, though, I thought, as long as he could start feeling better and get some better quality of life on the ground level.  To accommodate all of the spend-the-night guests there, we rearranged Dad’s upstairs office into a makeshift bedroom.  We moved things around just a little that day, just as our ideas for our family’s future were shifting a little at a time.  

Spaghetti was served for supper that night, but Dad said he wasn’t hungry; he ate only some of what was put in front of him and then later that night kept asking his granddaughters to please bring him “just a little piece of chocolate,” which they delighted in doing, over and over, per his request.  He was glad to have my husband join him in having a beer after supper (we allowed him two beers that day - it was a special occasion!).  Sitting at the kitchen table pouring over the discharge instructions from the rehab facility,I created a checklist listing all medicines, their dosages, and at what time each was to be taken each day, and I felt like I actually had some control over what was going on for the first time since Dad had gotten sick.   

On Saturday morning, Dad’s long-awaited reward arrived:  Foster the Cat!  Foster took a couple of laps around the house to investigate and then settled in on Dad’s lap.  He seemed to instinctively understand that he was Dad's cat, and Dad was his person.  He didn’t seem to mind the two greyhounds at all and was quite content with his new home.  Dad said, “This cat is so adorable!  He’s perfect!”  The kids picked out an orange and blue cat collar and other necessary feline supplies at the store.  When they showed Dad the collar, for some reason he thought it was a bracelet for him, and he said, “Thanks! Auburn colors!” and then proceeded to wear it for the next few days. 

On Saturday afternoon, the home health nurse came to do an assessment to determine if Dad would get therapy and/or nursing support at home.  Mom and I sat with her at the kitchen table and answered questions and filled out paperwork while my sister and the kids entertained (and supervised) Dad, who greeted the nurse when she came in but seemed either unaware or uninterested in the reason for her visit.  When she asked Dad about his pain level, and he told her, “I feel pretty good!” despite the fact that he had rated his headache pain at a 5 or 6 out of 10 since he had gotten home.  

Several times that day, Dad said he wanted to go to the bedroom and lie down.  Sleep continued to elude him, and he was constantly tired.  When he was in the den in the middle of all the action, he seemed distracted and overloaded.  “Sorry, but there are too many people in the room for me,” he said at one point.  We wanted him to be in the middle of the conversation like he typically would be, but we helped him into the bedroom for some quiet time, although at least one of us kept an eye on him all the time for safety reasons.

Dad, on his first full day home from rehab,
relaxing with Foster the Cat and Buddy the Dog
(Note the "bracelet" Dad is wearing.) 

In between the welcome-home festivities and the road trip preparations, we took turns visiting my grandmother at the nursing home.  Like we had done as much as possible since Dad had gotten sick, we reported back to him about what was going on with Grandmom.  He was very worried about his mom and was concerned that she might be upset that he hadn’t been to see her over the past month.  We assured him that she was ok and that she didn't seem to realize how much time had gone by since he was last there.  Even though my parents’ house and the nursing home were only about ten miles apart, it seemed like they were in two different worlds.  We had decided early on in Dad’s illness not to tell Grandmom about Dad’s sickness; she was very confused, and we felt that as long as we were able to continue to visit her and to make sure she was well cared for, she was better off not having to know about Dad’s health.  When I stopped by the nurses’ station at the nursing home, the staff members there were visibly shocked when I told them that Dad had cancer.  “That bald guy has cancer?” one of the nursing assistants said incredulously.  “He looks so healthy, and he’s always so energetic and cheerful!”  They promised to keep a careful watch on Grandmom and to make a note in her chart about the new chain-of-command of phone numbers should they need to call us about anything.

A birthday celebration for Mom

Sunday was Mom’s birthday; Dad had told me a few days before that he thought he remembered buying her a ring for her birthday before he got sick, but he couldn’t remember where he’d put it, if he had indeed made the purchase.  “Maybe I just dreamed that I bought it, or maybe I just meant to do it and then I ran out of time,” he said.  He told us to get money out of his wallet and buy her something on his behalf, and so we bought her a spa gift certificate from him and we celebrated the best that we could, grateful to be together as a family and happy that Dad was home.  

That afternoon and evening, armed with our Notebook filled with questions to ask at the Brain Tumor Clinic at Duke, we packed and prepared for our journey to Durham, NC.  The Notebook served as kind of a coat of armor for us; I felt a little better just carrying it around with me.  Our lists were organized by topic; we had one or more pages filled with things to find out about under the categories like “Genetic Approaches,” “Holistic Treatment Options,” “Clinical Trial Options,” “Prognostic Indicators,” and “Off-label Medication Treatments.”  Between us, we had done hundreds of hours of reading about possible treatments for this type of Brain Cancer over the past four weeks.  We were as fully invested as we could be, and this was a fight we intended to win.  I wrote on the cover of the Notebook:  Our goal is to give Dad full access to the best new treatments, in optimum combinations, as quickly as possible, to support him in quality time for as long as possible.

My middle sister, my mom, and I went to bed soon after Dad that night (clarification: he was already in bed fretting about not being able to sleep, again, and we agreed to take turns sitting up with him throughout the night).  We felt like warriors, on a quest for the best weapons we could get our hands on as we marched into battle.

Up next ... Part 18 - The Long And Winding Road

Part 16 - Holding On

Continued from Part 15

The uphill climb continued during Dad’s homestretch in rehab; he was counting down the days until he could go home, and so were we. Dad was very bored and frustrated with the therapies and the routine there.  He didn’t see the point of 99% of what was going on in the therapy sessions; he hated that he had to work on simple arm and leg exercises and even just walking with a walker, and so did we.  There was so much unfairness and turmoil, and having to swallow his pride on a daily basis was rough stuff.  When I was there to observe, I noticed that the therapists didn’t explain to Dad why they were having him work on the things that they were, things that seemed far beneath the pre-tumor person that he was.  It’s possible that he wouldn’t have paid attention or remembered or appreciated the explanations had they been forthcoming, but I thought it was a shame that they didn’t even try to make things clearer for Dad.  Dad didn’t see the point of many of the activities; he thought they were a waste of time and childish, and in many cases, I didn’t disagree.  It’s hard to be motivated when you don’t see the point, and the point is much more unclear when a person has suffered a brain injury.

Progress was slow and inconsistent.  I wanted to believe that it was because of the lack of sleep and/or the persistent headaches and pervasive fatigue that Dad suffered from; I wanted to avoid finding out otherwise, although I knew there was a possibility that something much more detrimental and sinister what would eventually be unveiled.  

The uber-early morning wake-ups by the staff continued, as did the seemingly fly-by-the-seat-of-your-pants rulings on how (or if) Dad’s crazily fluctuating blood sugar levels and the headaches should be addressed.  Several days would go by without Dad’s blood sugar level being checked at all, but then a nurse would check it and find it to be abnormally high, after which it would sometimes be treated and sometimes not.   Dad’s eating habits were erratic; he frequently requested sweets and junk food, which was very out of character for him.  We asked the nurses and doctors many times if we should limit the sugar he ate, and each time we were told not to worry about it because the out-of-control numbers were related to the mega-doses of steroids he was having to continue to take.  At best, it was frustrating; at worst, it was alarming.

On the morning that we began Dad's last week in rehab, a nursing aide helped Dad into the shower and then stepped out of the bathroom for a couple of minutes, during which time Dad got up from the shower bench and tried to use his foot to dry water on the floor with a towel, which resulted in his falling.  Luckily, Dad was unhurt, but the fall highlighted the fact that there had really been no improvement in his safety awareness since he had gotten to rehab.

After this incident, I called the rehab director to assert that Dad should not be left alone, even for a minute, and to inquire again about getting recommendations and orders for things that would be necessary after discharge, including home health equipment, a handicapped parking permit, outpatient therapies, and insulin training.   I never got a phone call from the social worker, the woman whom we had been told was our Case Manager; very obviously, the onus was on the patient’s family to figure out what needed to be worked out before the patient went home.  I thought it was absurd that I was having to make a list and chase down the support we needed on this; I shutter to think what would have happened otherwise.  Dr. Rehab informed me when I called that Family Education Day would be two days before Dad was discharged.  I told him that was going to be tough to work out for most of Dad’s family; we were all traveling from other cities and were piecing together what needed to be done in between working and taking care of what needed taking care of on our own home fronts.  There wasn’t another option available for this, though, and so I took the day off work and went to the training.  During the training, I inquired about getting an order for a wheelchair since Dad was unable to cover long-distances without totally wearing himself out.  I asked AGAIN about insulin training and seizure training, and I brought up my continued concerns about the need for emotional support.  To all of it, we were told that the recommendations would be given to us in the discharge paperwork, which we’d be given when Dad was on his way out the door.  (**Side note:  I called the oncologist and explained about the wheelchair, and one was delivered, which was nice, but it was an extra-wide!  My 5’10” 155 pound Dad did NOT need an extra-wide anything; in fact, pre-tumor Dad would have been highly insulted at the width of the wheelchair that was rented to him.  I was half-relieved and half-saddened by the fact that he didn’t notice the size of the wheelchair and that he didn’t mind that I’d insisted on getting him a wheelchair.)

Besides the tediousness of the therapies, the lack of privacy, the boredom, and the early-morning wake-ups, something else that Dad really hated at rehab involved eating.  As I posted on the Care Page during this time, “Contrary to what we usually hear about hospital food, Bill says the food at the rehab center is actually pretty good.”  What he didn’t like was having to eat in bed or sitting in a wheelchair with his plate of food on the rolling hospital table for every meal.  He still could not feel much of anything on his left side, which made the motion of plate-to-mouth difficult.  More often than not, he ended up with food spilled on the table, on the floor, on himself, or any combination of the three.  He frequently got very annoyed with himself when he spilled; we tried to clean it up quickly and convince him it wasn’t a big deal, but he was irked and dispirited nonetheless.  

Dad’s buddy the neuropsychologist came by a couple more times that last week; Dad still thought the guy was great, but the guy was getting on my nerves.  At one point, Dad wondered aloud how he had gotten brain cancer, and I heard Dr. N tell Dad that there were some studies indicated that “there could be a link to excessive cell phone usage.”  Great – let’s add Guilt to the other mess of emotions Dad is trying to cope with.  (**Side note:  His saying that would have been bad enough if it were true; it was all the worse because to date no valid studies have conclusively linked cell phone usage with brain cancer.  Jerk.)

Mom asked Dr. N what we should do about finding a neuropsychologist for follow-up after discharge, and Dr. N gave us the name of someone whom he said was a friend of his and was "very good."  Coincidentally, she was affiliated with the practice where our oncologist worked.  That sounded like a good plan, except that when I called to schedule an appointment with her, I was told that she was out on maternity leave through the end of January.  Dr. N himself saw patients on an outpatient basis, but his practice was located even further away from my parents’ house, which would’ve meant about an hour drive each way for them, which didn’t seem reasonable.  He offered no other ideas, and so I added that to my list of things to figure out after discharge.

My mom and I worked our way through a stack of paperwork that we had to FedEx to Duke, and Dad got another MRI scan which was sent to the Brain Tumor Clinic there too.  Dad had another appointment with the Radiation Oncologist; this time he got fitted for a special face-mask which he would wear to hold his head still during radiation treatments that were planned to begin soon after the Duke trip. 

The promise of a nightly Foster’s was a powerful reward for Dad; each evening he savored the beer while he made plans of what needed to happen so that he could sleep better that night (“I need total darkness in here!”  “I’m going to read for 30 minutes and then no talking!”  “I’m going to make myself stay up until 11 p.m. and then I’m going to eat some peanut butter crackers to help me sleep!”)  Every night was a hopeful strategy, none of which worked.  Like Dad, we were all just holding on until Going Home Day.

Coming up next in the Behind The Scene Story ... Part 17 - Going Home

Part 13 - The Quest for Foster

Continued from Part 12

In between the flurry of things going on that second week in November, Dad stayed focused on adding things to his Revised Bucket List.  He had always been such a positive thinker, and overall that remained the same, despite the obstacles and the hardships. 

Another thing about Dad that was unchanged was his enjoyment of sipping a cold beer at the end of a hard day.  Even in the ICU after his surgery, he started asking each morning if he could have a beer that evening.  ("Just trying to plan ahead!" he said.)

What do you say in answer to such a simple request from someone who is dealing with such tragedy, someone who is putting forth such effort while suffering and struggling so much, someone whom you love so very much?  The term simple pleasure took on a whole new meaning as we campaigned first the doctors at the hospital and next the one at the rehab facility to get permission for Dad for drink one beer at the end of each day. 

All of them gave the same answer:  as long as it had been at least a couple of hours since he’d had pain medication, as long as he’d eaten something beforehand, and as long as we kept it quiet.  I never quite figured out why Condition #3 was an issue, but we figured whatever it takes and smuggled in the beer for Dad. 

Dad’s favorite way to drink beer was in a can, and he thought it was funny when we wrapped a brown paper bag around the can for concealment.  His second-favorite way to drink it was in a cup over ice, which was handy since we sometimes had to stash a can or two somewhere in his room for a while before Conditions #1 and #2 were met, which meant the beer was hot when it was time to serve it.  As a bonus, a cup was great camouflage, plus Dad loved crunching the crushed ice, too.  We often had to remind him that the nurses and nursing assistants weren’t supposed to know about the beer; several times one of them came into the room while Dad was drinking his nightly beer.  “How’s it going?” one of the male nurses asked him one night.  “Great!” Dad said.  “I’m just drinking a beer!”  The nurse got a shocked look on his face and said, “You’re kidding, right? We don’t allow beer in here!”  Before Dad could give the answer that was sure to be completely honest, I said, “Oh, he’s such a kidder!”  The nurse laughed and went on his way. 

By far, Dad’s favorite kind of beer was Foster’s; he loved the big blue oil can that it came in and thought it was cool that the alcohol content was higher than a “regular” beer.  He was happy to have his wish of getting a beer each night granted, but he was thrilled when that beer was a Foster’s. 

Plotting to get his daily Foster’s became a major mission of Dad’s during this time.  In fact, as we drove up to the rehab hospital on the day Dad was admitted there, he spotted a Super Wal-Mart across the street from where we parked and commented that it would be so handy for us to run across the street after supper at night to get him a Foster’s.  ("Just trying to plan ahead!")

On the night of the third day after we got to rehab, my aunt stayed with Dad while Mom went to get the contraband.  Bad news:  Super Wal-Mart wasn’t that Super – they didn’t have a single oil can in the whole store.  Mom drove up and down the street in search of a Foster’s, but to no avail.  She bought a Bud Light tall-boy instead.  Dad was grateful to get that, but he wasn’t happy when Mom told him about the shortage of Foster’s.  “I just can’t believe that they were all out of it!” he incredulously told my mom and my aunt, as if they were trying to pull a fast one on him for some reason.  My aunt later went to several other stores in search of the desired bounty and was told at several locations that the distributor in the area was running low.  “Huh?” Dad said when she told him the news.  “Why can’t they just make more??”

My youngest sister came to stay with Dad the next night and brought him two things that he really wanted, some chili from Wendy’s and a can of Foster’s that she had scored at a convenience store on the outskirts of town.  “This turned out to be a good day after all,” Dad told her.

Early the next day, I got a phone call from the scheduler at the Brain Tumor Clinic at Duke University:  Dad had been accepted into their program and was scheduled to be seen on the Tuesday and Wednesday before Thanksgiving.  Again, I cried tears of joy and speed-dialed everyone in the family to let them know the great news. 

Over the weekend, my younger sister and her husband spent time with Dad; some family members who saw the news on Dad's Care Page about the quest for Foster's had procured a few stray cans of Foster’s, and Dad was happy as he savored one while he watched the Auburn football game that Saturday.   

Running concurrently with his campaign for Foster’s beer was Dad’s quest for getting a cat.  This quickly moved to the top of his Revised Bucket List, and, around the time the area supply of Foster’s beer was running low, Mom agreed that Dad could get a cat.  Several of Dad’s sleepless nights were spent discussing what he should name the cat, and he finally settled on none other than the name of his favorite beer:  Foster. 

While my brother-in-law and Dad were spending some Male Bonding Time (“binding time,” Dad always called it) that weekend, Mom and my sister went to look at cats.  One had been hand-picked by a friend of my mom’s; he fit the description of what we were searching for in a cat – not to old but not too young, calm enough to sit in Dad’s lap, and good around dogs and children.  They liked him right away, and he was ear-marked for Dad as soon as Dad got home from rehab.

That Sunday night, I called Mom and told her that my mother-in-law had bought a case of Foster’s that she had found in our city and that I would be delivering the beer to Dad when I got there a couple of days later.  “Great, great news,” I heard Dad say in response when Mom told him.  “That, plus the cat – I’m coming out pretty well this weekend.” 

Coming soon … Part 14 – Missing The Boat